Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Sensitivity level means...??


pschwab

Recommended Posts

pschwab Enthusiast

My son was diagnosed with celiac a little over a year ago. Our whole house is gluten free, and we rarely go out to eat. He is in preschool and they are very careful with him. As best I can tell he has not been glutened since he went gluten free. My question is about sensitivity levels. I read this forum often and sometimes see comments like, "I'm very sensitive so what affects me might not trigger others". If he's not showing outward signs of being glutened, I'm wondering if he's doing an excellent job staying away from cross contamination or if he is being cross contaminated and we don't know. Also if he's not showing signs of being glutened, could he still be doing unknown damage to his intestines? We are super careful with him but he's three and puts toys in his mouth that I fear neighborhood kids might have touched with "gluten hands." We require anyone entering the house to wash immediately but with three siblings there are lots of kids in and out daily. When he was diagnosed his ttg levels were 300, 6 months later they were 71, a year later they were 26. He will be tested again next February. I'm just anxious since he's in such critical growing years. Any insight would be great. Thanks!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tessa25 Rising Star

Sounds like he's doing great! Why not have the doctor test the levels now so you can see how he's doing?

 

  • 3 weeks later...
CeliacMommaX2 Enthusiast

We were stressed about this as well with our daughter.  It ended up taking 2+ years to get her to "negative" TTG levels (which then came up again at 2.5 years).  We also live in a gluten-free household and never go out to eat.  Because she started growing again, the doctors are not concerned. But as a mother, I'm always worried about it!  Just do your best and I'm sure he will continue to heal.  I've been told the younger a child is diagnosed, the more fully they are able to heal.

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.